Hi, I posted an introduction a while back in the introduction section. My name is Nelie. I was diagnosed with SCC of the left tongue in January, (1/19) had a selective neck dissection and partial glossectomy to remove the tumor (2.5 cm)on Feb 9. They removed about 1/3 of my tongue and 22 nodes from my neck, all of which were clean, making me T2NOMO. Two days after my tongue cancer diagnosis I went for a regularly scheduled mammogram and was told I had a suspicious looking mass that needed a stereotactic biopsy ( I think that was one of the worst weeks of my life
). I had that biopsy feb. 7th and found out 2 days after my tongue and neck surgery that I also had breast cancer.
The breast mass was small (1 cm) and so I chose to have a lumpectomy, sentianl node removal and radiation as treatment.
The benefits of being treated at a small hospital with one tumor board: there were not clear margins on one part of my tongue from the Feb 9th surgery but the two surgeons (ENT and breast) cooperated so I had one long day on Feb. 25 of sentinal node indentification/lumpectomy and sentinal node removal/tongue surgery instead of having to have two separate surgeries requiring general anesthesia. From this second surgery the margins for the tongue were cancer free (also my breast sentinal lymph nodes were clean making the breast cancer a nonaggressive stage I).
I was (am) being treated locally by a local ENT with experience in doing cancer surgery and at a brand new radiation medicine extension of Roswell Park cancer institiute in Buffalo that is located at our local hospital. This brand new extension had a radiation oncologist, who has since left (rumor has it was fired) who said he didn't think I needed radiation after my surgery. He apparently formed this opinion after consultation with the other radiation oncologists at Roswell Park but may not have presented all the info. in my pathology report.
Anyway, my ENT surgeon expressed some concern about this and at his urging I decided to request a second opinion. I chose Dana Farber in Boston because I am originally from that area. I went there for the second opinion on March 9th, which should have allowed enough time for the breast surgery to heal. However, the breast incision became infected almost right after surgery and, a week and 1/2 after surgery (and the day before I was heading to Boston) had to be drained. It is now being cleaned and packed daily and will probably not be healed all the way over for another three weeks or so. So the trip to Dana Farber was right after all this (tiring) and we drove through a nor'easter to get there (thank God my husband is a steady driver)!
Anyway, to make a long story short(er), the folks at Dana Farber pointed out I had certain risk factors for recuurence depsite being stage II including perineural invasion, a fairly thick tumor (1.5 cm), and something else which honestly I am forgetting right now, which indicated I should have radiation. Our new facilty has IMRT and they said with IMRT I should be able to have my parotid glands spared somewhat IF the programmer knew how to do that. They said it would really require an expert programmer to do it. They said I would need both sides of my neck radiated. They also suggested concurrent chemo but acknowledged this is not the standard for Stage II although they believed it would have definite benefits in terms of reducing reccurence.
When I came back here I met with a rad. oncologist from Roswell Park who has replaced the guy they let go, who said (after talking to dana Farber) they had re-evaluated my case at Roswell Park and agreed I needed radiation and that they could use the IMRT radiation to spare my right parotid gland. However, they are saying I don't need the right side of my neck (the right lymph nodes) radiated since no cancer was found on the left, it is very unlikely there would be cancer on the right side. They are radiating both sides of the mouth.
Also, he disagreed about the chemo recommendation. I posted about this elsewhere but the issue is that of the two phase 3 experiments testing the benefits of combined chamo and radiation versus radiation alone, only one (the one done in Europe) included people like me--high risk Stage II--the other used only Stage II and IV (they gave me copies of this research to read at Dana Farber. The articles are in the May 204 New England Journal of Medicine if anyone is interested). Anyway, the one that did use people like me didn't break out the results by stage (the trained statistician in me suspects this is because they simply lacked the statistical power to state that the effect was statistically significant even if it looked like it was there if they did comparisons for each subgroup by Stage but who knows). Apparently right now chemo with radiation is standard for high risk stage II in Europe, bsaed on this research, but is not recognized as the standard in the States according to my radiation onc. here.
Anyway, for me it may be a moot point because with a deep open incision that is slowly healing from infection, I cannot have chemo until it is healed. And it probably won't be healed by the time I start radiation (which I hope will be April 4th--I have to have two teeth pulled Tuesday and then that needs at least a week and 1/2 to heal). I am more concerend about the fact that at D-F they said I definitely need both sides of my neck radiated and they disagree about that at Roswell Park. These are both National Cancer Centers! I don't know how much of an issue I should make of this--I want to keep my parotid functioning (which they say not radiating the right side will help accomplish, though the folks at D-F clearly said there were other ways of sparing the parotid) but I don't want to go through all the trials of radiation and then find out it didn't protect me from a recurrence because they should have radiated a spot they missed.
I am also just exhausted from fighting the breast infection, the grueling drive to Boston and back, getting the breast dressing chnaged every day, and trying to get things set up for radiation (seeing the dentist, finding people to be with me when my husband has to be at work, etc.) I also will be being treated at a facility where I will be the first oral radiation patient, even though the radiation folks who are there from Roswell Park are not new to this, and they are cehcking all the calulations etc. for the radiation, there will be no nurses with handy tips about what has worked for other people.
Please --any help telling me the day to day things I might need to knwo to get through this will be of great value--anything will be of help!
Also I'd welcome anyone's thoughts on what I should do about the differing opinions (from two highly rated cancer care centers) about whether my right neck needs radiation.
Nelie
